{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,15]],"date-time":"2026-04-15T01:08:54Z","timestamp":1776215334621,"version":"3.50.1"},"reference-count":42,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2017,10,4]],"date-time":"2017-10-04T00:00:00Z","timestamp":1507075200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2017,10,4]],"date-time":"2017-10-04T00:00:00Z","timestamp":1507075200000},"content-version":"unspecified","delay-in-days":0,"URL":"http:\/\/www.springer.com\/tdm"}],"funder":[{"DOI":"10.13039\/100010475","name":"American Society of Pediatric Otolaryngology","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100010475","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100010475","name":"American Society of Pediatric Otolaryngology","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100010475","id-type":"DOI","asserted-by":"crossref"}]},{"name":"American Academy of Otolaryngology-Head and Neck Surgery (US)"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Journal of Genetic Counseling"],"published-print":{"date-parts":[[2018,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>The aim of this study was to obtain patient and parent perspectives on genetic evaluation of hearing loss, in order to identify motivators, expectations, and barriers. Three focus groups were conducted following a semi\u2010structured discussion guide, led by an independent moderator. Participants were hearing parents of children with permanent hearing loss or deaf adults. Qualitative content analysis was used to develop a codebook and identify major themes and subthemes. Participant views were compared to national guidelines. The 28 participants comprised 23 parents representing 21 unique families and 5 deaf adults. 13\/21 families and 0\/5 adults reported comorbidities, 4\/21 families and 3\/5 adults had a positive family history, and 12\/21 families versus 0\/5 adults had utilized genetics services. A common theme among adults and parents was a curiosity as to the cause of hearing loss. Parents were motivated to detect comorbidities and optimize care for hearing loss. Some parents felt overwhelmed by the hearing loss and unprepared to pursue early genetic evaluation as recommended in guidelines. Several reported positive experiences following genetics consultation, while others reported unease and unmet expectations. Notably, both parents and adults expressed ambivalence regarding the desire for genetic knowledge. Financial concerns and difficulties obtaining a referral were cited as extrinsic barriers. For parents of children with hearing loss, both the presence of comorbidities and a positive family history were drivers of genetics consultation and\/or genetic testing. We identified educational opportunities for both patients and providers that would improve informed decision\u2010making and increase access to genetic services. Consideration of the patient\/family perspective and their decision\u2010making processes, along with flexibility in the approach to genetics evaluation and its timing, will optimize both the development and implementation of guidelines.<\/jats:p>","DOI":"10.1007\/s10897-017-0149-9","type":"journal-article","created":{"date-parts":[[2017,10,4]],"date-time":"2017-10-04T16:08:45Z","timestamp":1507133325000},"page":"597-607","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":15,"title":["\u201cMy Plate is Full\u201d: Reasons for Declining a Genetic Evaluation of Hearing Loss"],"prefix":"10.1002","volume":"27","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8931-9373","authenticated-orcid":false,"given":"Marci M.","family":"Lesperance","sequence":"first","affiliation":[{"name":"Division of Pediatric Otolaryngology, Department of Otolaryngology\u2010Head and Neck Surgery University of Michigan Health System CW\u20105\u2010702 SPC 4241, 1540 East Hospital Drive Ann Arbor MI 48109\u20104241 USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Erin","family":"Winkler","sequence":"additional","affiliation":[{"name":"Genetic Counseling Program University of Michigan Health System Ann Arbor MI USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tori L.","family":"Melendez","sequence":"additional","affiliation":[{"name":"Division of Pediatric Otolaryngology, Department of Otolaryngology\u2010Head and Neck Surgery University of Michigan Health System CW\u20105\u2010702 SPC 4241, 1540 East Hospital Drive Ann Arbor MI 48109\u20104241 USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Beverly M.","family":"Yashar","sequence":"additional","affiliation":[{"name":"Genetic Counseling Program University of Michigan Health System Ann Arbor MI USA"},{"name":"Department of Human Genetics University of Michigan Health System Ann Arbor MI USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2017,10,4]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1097\/00125817-200003000-00006"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2014.2"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1399-0004.2008.01088.x"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1093\/deafed\/enq012"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.1086\/316901"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.gim.0000250501.59830.ff"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.33380"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.10676"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1001\/archotol.133.3.231"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1136\/jme.2010.040220"},{"key":"e_1_2_12_12_1","unstructured":"Genetics in Primary Care Institute Website(2015).geneticsinprimarycare.aap.org.Web. 1 Oct. 2015 fromgeneticsinprimarycare.aap.org."},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-005-9003-6"},{"key":"e_1_2_12_14_1","volume-title":"Innovations in service delivery in the age of genomics workshop summary.","author":"Hammers E.","year":"2009"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-007-9110-7"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1159\/000335552"},{"key":"e_1_2_12_17_1","doi-asserted-by":"publisher","DOI":"10.1001\/archpedi.154.5.484"},{"key":"e_1_2_12_18_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10897-015-9847-3"},{"key":"e_1_2_12_19_1","doi-asserted-by":"publisher","DOI":"10.1097\/01.GIM.0000055200.52906.75"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.32013"},{"key":"e_1_2_12_21_1","unstructured":"Michigan Hands & Voices Website(2010).http:\/\/www.mihandsandvoices.org\/contact.html. 2016.http:\/\/www.mihandsandvoices.org\/contact.html."},{"key":"e_1_2_12_22_1","doi-asserted-by":"publisher","DOI":"10.1086\/302060"},{"key":"e_1_2_12_23_1","doi-asserted-by":"publisher","DOI":"10.1023\/A:1009439630457"},{"key":"e_1_2_12_24_1","doi-asserted-by":"publisher","DOI":"10.1353\/sls.0.0038"},{"key":"e_1_2_12_25_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1749-6632.1991.tb19572.x"},{"key":"e_1_2_12_26_1","doi-asserted-by":"publisher","DOI":"10.2310\/7070.2005.34501"},{"key":"e_1_2_12_27_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.e6572"},{"key":"e_1_2_12_28_1","unstructured":"OMIM(2016).Online Medelian Inheritance in Man.OMIM is a comprehensive authoritative compendium of human genes and genetic phenotypes that is freely available and updated daily.http:\/\/www.ncbi.nlm.nih.gov\/omim. 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